Keynote speaker at the conference is Geoff Regan, MP, Speaker of the House of Commons

“The Honourable Geoff Regan MP was first elected as the MP for Halifax West in 1993. On December 3rd 2015, his colleagues chose him to be the Speaker of the House of Commons. Mr. Regan is joining us this year at the CSA Conference to share his journey as a person who has lived with stuttering. He will talk about his role as Speaker and his career in politics, and of finding help through speech therapy and Toastmasters public speaking.”

Backstories about the early days of the Canadian Stuttering Association

A blurb for my Oct. 22, 2016 workshop at the conference reads:

“The emergence of national associations for people who stutter can be described as a form of community self-organizing. Jaan will describe the needs that led to the forming of the CSA and participants can explore how community organizations grow and change in response to changing needs.”

The purpose of the current post is to share some of the backstories that are associated with my own involvement with the CSA, in its early days.

My volunteer work on behalf of people who stutter is a very small part of my volunteer work these days but the skills that I learned, when I was active in this area, have come in handy in the volunteer work that I’ve been doing more recently.

In preparing for the workshop, it has struck me how active I was with the CSA in years past, and how relatively little I know about what is going on with the association now. That is such an interesting experience – to realize that, as with anything, as soon as you step back, your contact with the day to day operations of an organization quickly diminishes. My current role has to do just with the fact that I was, indeed, actively involved in the early years, as a co-founder of CSA.

As a volunteer working on behalf of people who stutter, I’m now involved mainly through giving occasional talks at local elementary schools.

Early history of CSA

The following overview is based on a summary that I prepared in August 2010, to which I have added some updates, such as the references to the work of Amy Cuddy (2008 & 2015).

CSA had its origins in decisions made at the first-ever Canadian national conference for people who stutter in Banff, Alberta, in August 1991.

Originally called the Canadian Association for People Who Stutter (CAPS), the name was later changed to the Canadian Stuttering Association. The shorter name makes it easier for CSA to publicize its work in newspapers and other media.

Several groups worked together to lay the groundwork for the Banff conference. People had been thinking about a conference for some time. In February 1989, Mike Finlayson, of the Stuttering Association of Toronto (SAT), spoke of his willingness to coordinate a national meeting of self-help groups. The idea was to hold it in Toronto.

In April 1989, during a visit to Toronto, Einer Boberg, co-founder of Edmonton’s Institute for Stuttering Treatment and Research (ISTAR), met with the SAT group and later with the Toronto PFSP group, the Demosthenes Society. At that time many members of Toronto self-help groups were talking about staging a national conference, and forming a national network of self-help groups.

Also in April 1989, Willard Mohr, active with the Ottawa and Toronto PFSP [Precision Fluency Shaping Program] groups, organized a regional meeting in Brighton, Ontario, east of Toronto. Willard has subsequently moved to Calgary. The Brighton meeting helped lay the groundwork for the Banff conference, as did regional meetings of several self-help groups in Hamilton in May 1990 and in Belleville in July 1991.

Ron Day of Belleville was also active in the networking across Southern Ontario that played a key role in setting the stage for the Banff Conference, the planning for which b began a couple of years before the event.

Among the many things that I learned, in those years, was the value of planning and the value of getting input from as many people as possible, during the planning process.

It’s like making a movie or like any media production: You need a script, an agenda, a plan. The quality of the movie is frequently determined by the quality – and the amount of time and energy and thought that has been devoted – to the script.

When a conference or even is well planned, the big day runs smoothly and, relatively speaking, the organizers can relax and have a good time along with everybody else.

Planning began in 1989

In July 1989, representatives of SAT and the Alberta Stutterers Association (ASA) met in Edmonton to begin the planning of the first national conference. It was agreed that there would be input from self-help groups across Canada – and that final decisions would be in the hands of an organizing committee in Edmonton, headed by Lyn Kelly.

Early on, the organizers also decided that the conference would involve a variety of treatment centres. It wouldn’t be focused on or connected with just one approach to
treatment. Rick Randall of Toronto, whose work involved public opinion surveys, prepared a professional quality survey, which established the level of interest, among self-help groups across Canada, in such a conference. The survey also asked potential attendees to rate different workshop ideas in terms of how interesting they sounded.

Whether a national association emerged from the conference would be determined by all of the groups involved in planning of the conference. A consensus also emerged that the
proposed national association would respect the individuality and autonomy of member
groups. It would not be an association that told the groups what policies they were
expected to follow.

A series of regional meetings in Ontario, prior to the conference, involved meetings in which people would break into small groups to discuss specified topics. Under these conditions, each person at a meeting gets to speak about the same amount of time.

First CSA conference was in Banff, Alberta

At the Banff meeting, a series of plenary sessions – involving all of the 80 or so
people at the conference – discussed several questions. People would break into groups
of eight people, with the composition of each group determined beforehand to ensure a
wide distribution of people. One person from each group would report back to the meeting of all the groups, and the plenary session would then make decisions.

During those sessions, attendees agreed to proceed with the formation of a national network of self-help groups, and to organize national conferences on a regular basis.

Further regional meetings and ongoing contact by phone and fax machine (this was before email) led to development of a governance model for the association. The association would seek representation from all parts of the country, would adopt a “flat-hierarchy” model of decision making, and would seek to alternate conferences between different regions of Canada.

At the next national conference, in Ottawa in 1993, a draft version of the CSA constitution, written by Peter Wyant of Regina, was debated in a series of plenary sessions. The final version included the concepts that CSA would serve as an impartial forum for sharing of information. It would work closely and collaboratively with speech professionals – while maintaining autonomy and independence from speech pathologists and researchers. The constitution also specifies term limits of two consecutive terms for the office of national coordinator. In this way many people over the years would have the chance to lead and CSA wouldn’t depend on one “leader for life.”

Michael Niven of Calgary chaired the plenary sessions at the Ottawa 1993 conference, and prepared the final version of the constitution. He later also arranged for the incorporation of CSA.

CSA members were also active in the early networking among self-help groups in the 1990s on behalf of the International Fluency Association (IFA). They were
also involved in setting the stage, through international networking, professionally
designed surveys, and assisting in development of the constitution, for the International
Stuttering Association (ISA):

After the Banff conference, CSA conferences were subsequently held in Toronto (1995); Vancouver (1997); Montreal (1999); Calgary (2001); Toronto (2003); Edmonton (2005); and Toronto (2007). There have been conferences since that time but I’ve lost track of such details as I’m not involved with organizing of CSA events or conferences.

Jaan Pill, who had founded the Stuttering Association of Toronto in 1988, served as the first national coordinator for CSA. In 2000, David Block, who had attended the CSA 1995 conference while he was a university student in Ottawa, became the next coordinator. Shelli Teshima, who had been active as a volunteer with self-help groups in Western Canada, took over as coordinator in 2005. In subsequent years, Lisa Wilder has also served as the coordinator as recall. The most recent person to take on the coordinator role has been Andrew Harding.

CSA is entirely run by volunteers.

For more recent information about CSA, I strongly recommend a visit to the Canadian Stuttering Association website. The organization is also active on Facebook and Twitter.

Stuttering – A Listener’s Guide

Some years ago, I worked with film editor Stephen Toepell to put together an online video called Stuttering – A Listener’s Guide. The video was based on a talk I gave in 2011 at the North York Kiwanis Club.

Below are some key points [with an update regarding the total number of people who stutter in Canada] from the talk. I imagine some things among the key points may be out of date. However, I also imagine many of the things that I have outlined remain valid even these few years later.

As I’ve been reading through these points, it has occurred to me that life takes us too all kinds of unique places. I’m really pleased that I’ve had the opportunity, over the past twenty five years, to compare notes with other people who’ve been through experiences that on many levels are similar to me own. I have learned so much from the realization that each person has a unique experience, in being alive, and we each have so much to learn from each other – if the willingness to learn is there.

The converse of that, the other side of the coin, is that some people find it easier than others to consider that what applies to one person does not apply to another. My way of seeing may make sense to me, but my way of seeing doesn’t mean that I can figure out another person’s life experiences. Your way of seeing makes sense to you, based on your life experiences, but you may not be in a position to figure out what my life experiences have been.

A more positive attitude toward those of us who stutter

Twenty five years ago, I was involved in the founding of the Canadian Stuttering Association, or CSA for short. CSA is run entirely by volunteers, and I am one of them.

Research indicates that, in countries around the world, stutterers are typically perceived as shy, nervous, introverted, fearful, and weak. There is a widespread public belief that stuttering reflects psychological difficulties. There is a lack of accurate information about the nature of stuttering. Movies in which stutterers are made the butt of jokes serve to reinforce these kinds of attitudes. The movie The King’s Speech, in contrast, featured a positive portrayal of someone who stutters. This movie has done wonders to raise public awareness about stuttering.

A number of things can lead to a more positive attitude towards people who stutter: If we encounter the real stories of people of who stutter, our attitudes will become more positive. The King’s Speech is based on such a story. If we are in regular contact with a colleague at work who stutters, our attitudes towards people who stutter will tend to improve. If we know what to do when speaking with a person who stutters, we’re also likely to develop a more positive attitude.

Amy Cuddy

A poignant and revealing reference, with regard to stereotyping and typecasting, is provided by the well-researched, well-presented academic and TED Talk work of Amy Cuddy, which I have highlighted in recent posts:

My own story

I want to briefly share my own story.

I began to stutter at the age of six. In my late teens and early twenties, I stuttered severely. Sometimes I could not get out any words at all. One time, I phoned someone and tried to say hello. I found the “H” sound at the beginnings of words especially hard to say. After about thirty seconds or so of trying to say hello, I just hung up the phone, without saying a word.

When I was thirty, I attended a three-week stuttering therapy program in Toronto. I attained some level of fluency as a result.

About a week after the Toronto clinic, however, I was speaking with a friend on the phone, and my newly acquired fluency skills flew out the window. I did retain enough of these skills, however, to graduate from a faculty of education. In the early years of my career, I taught small special education classes in Toronto.

May 4, 1987 Toronto Star article changed the course of my life

Eleven years later, on May 4, 1987, I read an article in the Toronto Star describing a stuttering treatment program in Edmonton. In July of that year, I flew to Edmonton and attended a three-week treatment program at the Institute for Stuttering Treatment and Research, or ISTAR for short.

Einer Boberg and Deborah Kully of Edmonton developed this program in the mid-1980s. The program has been continuously updated ever since. In Edmonton, I relearned how to speak. I like to say I learned fluency as a second language.

Fluency skills

The clinic [at that time] taught five fluency skills.

These included:

Easy breathing

Smooth blending of syllables

Light touches on consonants

Easy onset of voicing

Prolongation of vowel sounds

I knew from experience that I would have to work hard to maintain these skills after I left the clinic. I practised these skills every day for over four years. I recorded large numbers of conversations and phone calls, and analyzed two-minute segments of them, to ensure that I was applying the skills correctly.

“Not supposed to be able to do this”

Back in Toronto, I made many presentations. Every time I would be making a fluent presentation to a large audience, however, a voice inside me would say: “You’re not supposed to be able to do this. You’re supposed to be falling flat on your face.” That voice really bothered me.

At first I thought I should get some psychotherapy. But then I realized that what I needed to do was to compare notes with other people who stutter. That led me to start a local self-help group in Toronto. Our first meeting was in September 1988, at the North York Central Library.

A year later, a speech therapist who stutters, Tony Churchill of Mississauga, spoke at one of our meetings. At that meeting, I asked him about the self-talk that was bothering me each time I made a speech. Tony Churchill told me that this inner voice was telling me that I needed to adjust to some changes that had occurred in my life. After that, the inner voice never bothered me again.

What has worked for me will not work for all people who stutter

My involvement with a local Toronto group led me to become active in the stuttering community. I was a co-founder of the Canadian Stuttering Association in 1991, of the Estonian Stuttering Association in 1993, and of the International Stuttering Association in 1995. In 1995, I switched from teaching special education classes in Toronto, and began teaching regular classes at a school in Mississauga.

What has worked for me will not work for all people who stutter. About 80 percent of stutterers can achieve lasting benefit from the kind of speech therapy that I encountered. Some people who stutter, about 20 percent, for reasons having to do with how their brains are wired for speech production, are not able to attain the same lasting benefit. In that case, significant benefit can be derived from a “stuttering modification” approach whereby a person learns to reduce the severity of her or his stuttering.

The Canadian Stuttering Association is a registered, incorporated, non-profit organization. We offer an impartial forum for the sharing of information about stuttering.

We do not endorse or reject any particular way of dealing with stuttering, except in cases where someone alleges that they have a sure-fire “cure” for stuttering. As a rule, there is no cure for stuttering.

Many stutterers can learn to control their stuttering, so it does not interfere with effective communication. If we are able to achieve control over our stuttering, it means that we are able to be more productive and reach our full potential. The earlier a person gets treatment, the better. Not getting any treatment at all is also an option.

The causes of stuttering are unknown. The evidence to date suggests that stuttering is a neurological problem affecting speech production. There is no evidence that the causes are emotional or psychological. There is no evidence that stutterers share particular personality characteristics.

The King’s Speech

Will The King’s Speech lead to a change in public attitudes about people who stutter? At this point, we don’t know. Research is now under way to determine the answer to that question.

Perhaps the most salient feature of stuttering is the avoidance of speaking situations.

When we stop speaking, we remove ourselves from the mainstream of life. Stuttering affects about one percent of the adult population – about 360,000 Canadians. About five percent of young children stutter during the years they are learning to speak. More boys are affected than girls. Most young children outgrow their stuttering – but some do not.

Our advice to parents is that if your child stutters, you should seek assessment by a speech therapist who specializes in the treatment of stuttering. For preschoolers, effective programs are available, such as the Lidcombe Program.

A database of speech therapists, from across Canada, who are trained in the Lidcombe Program, is available at the website of the Montreal Fluency Centre.

Speaking with a person who stutters

What can you, as a fluent person, do when speaking with a stutterer?

Use natural eye contact and facial gestures to show you’re listening.

Look the person in the eye every once in a while, even when that person is struggling with words. That tells us we are still part of the human race.

Give the person enough time to finish his or her own sentences.

Use a relaxed pace in your own speech, but not so slow as to sound unnatural.

Avoid remarks like “slow down” or “take a deep breath.” Such advice is not helpful.

Aside from movies, books offer another great way to share stories about stuttering. Karen Hollett of Yellowknife has written a children’s book, Hooray for Aiden, about a girl who stutters. The central character, Aiden, faces the challenge of speaking out in front of her class, after arriving at a new school. This book, which is driven by a powerful and compelling story, has been sold widely to school boards across North America. I have read the book to hundreds of schoolchildren in visits to schools across the Greater Toronto Area over the past decade.

By way of summary, The King’s Speech is a story about a King who shows courage in dealing with the fact that he stutters. The sharing of accurate information helps to counter the myths about stuttering. Children’s literature and social media can play a strong role in the sharing of our stories. The Canadian Stuttering Association offers an impartial forum for sharing of information.

[End of overview]

Speaking notes – August 2001 Calgary keynote presentation

In the event you would like to read such a document, the speaking notes for a keynote presentation by Jaan Pill at a CSA conference in Calgary can be accessed here:

Presentations along similar themes were delivered at two international events in those years. One keynote was at a world congress, which took place in Ghent, Belgium in the 1990s, of the International Stuttering Association. Another keynote was a world congress of the International Fluency Association, in Montreal in the early 2000s.

In the early years I was also responsible for media relations on behalf of CSA. We had many national and international media interviews, on TV, radio, and in newspapers. Much of what I know about media work I learned in those years.

We are among other things dealing with stereotypes and stereotyping.

A Nov. 12, 2016 Guardian article is entitled: “ow to talk to strangers: a guide to bridging what divides us: The more we do to interact with people who aren’t like us, the better off we’ll be in the face of hatred that has become so visible thanks to Donald Trump.”

2 Responses to Early history of the Canadian Stuttering Association – now celebrating its 25th Anniversary

By way of a nice coincidence, today (Oct. 16, 2016) I saw the film Bridget Jones’s Baby, in which Colin Firth played a leading role, I enjoyed the movie – an interesting variation on the theme of who’s who.

Colin Firth played a leading role, as well – as you may well know! – in The King’s Speech.

I have explored the the two movies at further depth is a post entitled:

“The emergence of national associations for people who stutter can be described as a form of community self-organizing. Jaan will describe the needs that led to the forming of the CSA and participants can explore how community organizations grow and change in response to changing needs.”

The concept of community self-organizing has been a central focus in my volunteer work in recent years. It entails people coming together to represent their own interests.

What needs led to the forming of the CSA? I would say the key need was for people who stutter to represent their own interests, instead of remaining silent and depending on others to speak on their behalf.

How do community organizations grow and change in response to changing needs?

A key part of the approach to governance, that many of us working together in the early years developed, is based upon four principles, which have become part of the built-in culture of the Canadian Stuttering Association. The following lost is not in order of importance. All four principles are equally important, and are part of the culture of the organization.

Leadership succession is a key principle.

We have fixed terms of office for the national coordinator. In that way, the leadership of the organization is constantly renewed.

A second key principle is the concept of continuous improvement. We seek to work with all of our members, on a regular basis, to update our strategic plan and to follow through with the streps required to achieve each of our limited, finite number of strategic goals.

A third key principle is the concept of ownership. The organization belongs to all of its members. Input from every source is welcomed, and is sought. The members have a sense of ownership of the decision-making process. Anybody can step forward and begin to find a place in the decision-making structure.

The fourth principle is that we provide an impartial forum for the sharing of information. We do not, as an organization, tell any person who stutters how they should go about dealing with the fact they stutter. We are here to share information. We are not here to promote a particular way of thinking, or strategy, with regard to how to address stuttering.